Words by Tess Becker
There are many diseases, disabilities, or disorders that get a lot of press just based on the sheer number of people affected by them. While it’s good to have this awareness, sometimes it leaves other disorders out to dry so to speak. One such disorder is Pierre Robin syndrome.
Pierre Robin sequence, also known as Pierre Robin syndrome or Pierre Robin malformation, is a rare congenital birth defect characterized by an underdeveloped jaw, backward displacement of the tongue, and upper airway obstruction. It causes problems with breathing and eating since the tongue can displace lower in the jaw.
It affects 1 in 8,500 to 14,000 people.
People with the syndrome may need a permanent tracheostomy to allow them to eat and speak. That’s the reality for Alii Robinson, known online as Little Silver Tube.
Where some diseases have support groups and charities, Pierre Robin had none. Alii has Pierre Robin syndrome and had to make do on her own, trying to find the right treatment for her.
After noticing how little awareness there was about the disorder, she decided to start posting online, originally on a blog where she could share her experiences on. When she started posting on TikTok about things like how she cleans, wears and lives with her trachy she blew up almost overnight.
In the first 6 months, she gained over 100,000 followers and at the time of writing she sits around 111,000 with two million likes.
“Last year, I needed to change my tracheostomy tube, so I did that and I videoed it to put it on my blog,” Alii tells Smiley News. “I video it on TikTok and I only had like five followers and I thought there's no one's going to see it, so it's fine and then the next thing was it went viral.”
To her, the best thing about it so far has been connecting with others who have the disease and several have been in touch. They’ve shared how important her videos were to them, and Alii even helped one person source a manufacturer they were unaware of for their trachy.
She’s also reaching people who have tracheostomies for different reasons and who find ways to be seen and heard through someone like Alii.
“When I was younger, I didn't know anybody that had the same condition as me. My mom didn't know anybody that had any other children with a disability like I do,” Alii says. “So I think it's just key for me to kind of let other people that have my condition that have a tracheotomy as well just know that things can be okay.
“I am being who I needed.”
Establishing a charity
One of her main goals now is to establish a charity for Pierre Robin syndrome so there's a support system in place, something she didn’t have herself.
“So that there's more awareness, there's more support for people and for parents of children that have got my condition and just mainly to have that community and to know that you're not alone,” she says.
All in all, Alii just wants to be accepted and understood and wants people to feel the same way.
“I think it's this day and age now where everybody's so much more open to things,” she says. “It's a perfect opportunity to say actually, ‘yeah, this is who I am and I don't hate it anymore like I used to'.
“I've got my trachy but I don't let it stop me, I still go out, I've got my good job like I have a good life and I just want to be other people to be able to see that and if they're having a bad day they have a similar thing to me that could be like actually no, it's fine like I am okay, we will get through it.”